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İçerik Help4HD tarafından sağlanmıştır. Bölümler, grafikler ve podcast açıklamaları dahil tüm podcast içeriği doğrudan Help4HD veya podcast platform ortağı tarafından yüklenir ve sağlanır. Birinin telif hakkıyla korunan çalışmanızı izniniz olmadan kullandığını düşünüyorsanız burada https://tr.player.fm/legal özetlenen süreci takip edebilirsiniz.
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Help 4 HD Live!
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İçerik Help4HD tarafından sağlanmıştır. Bölümler, grafikler ve podcast açıklamaları dahil tüm podcast içeriği doğrudan Help4HD veya podcast platform ortağı tarafından yüklenir ve sağlanır. Birinin telif hakkıyla korunan çalışmanızı izniniz olmadan kullandığını düşünüyorsanız burada https://tr.player.fm/legal özetlenen süreci takip edebilirsiniz.
Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don’t forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc. **Please consult with you own physician for advice about any medical recommendation.
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639 bölüm
Tümünü oynan(ma)dı işaretle ...
Manage series 1076406
İçerik Help4HD tarafından sağlanmıştır. Bölümler, grafikler ve podcast açıklamaları dahil tüm podcast içeriği doğrudan Help4HD veya podcast platform ortağı tarafından yüklenir ve sağlanır. Birinin telif hakkıyla korunan çalışmanızı izniniz olmadan kullandığını düşünüyorsanız burada https://tr.player.fm/legal özetlenen süreci takip edebilirsiniz.
Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don’t forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc. **Please consult with you own physician for advice about any medical recommendation.
…
continue reading
639 bölüm
Tüm bölümler
×1 Help 4 HD Updates for 2025 with Katie Jackson 36:00
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36:00Help 4 HD Updates for 2025 with Katie Jackson
1 HD Resources Review: Grief & Loss 34:00
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34:00Pay What You Can: www.paywhatyoucanpeersupport.com/faqs Alliance of Hope: www.allianceofhope.org or phone number is 847-868-3313 National Suicide Hotline: If you live in the US, contact the National Suicide Prevention Lifeline by calling 988 or texting “Hello” to 741741. Their website is www.988lifeline.org They also have a chat option and services for deaf/HoH For other countries, visit this website: www.allianceofhope.org/feeling-suicidal HDSA Telehealth: www.hdsa.org/find-help/community-social-support/hdsa-telehealth/ You can also contact them by emailing HDSAinfo@HDSA.org or calling their Helpline at 800-345-4372…
1 Hospice For End Of Life Care Explained 1:10:00
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1:10:00Erika (HD Reach) and Lauren (Help4HD Podcast) talk with Clinical Social Worker and Hospice Supervisor Shivani Borah about Hospice and the end-of-life process. We discuss medications, advanced directives, and the myths and misunderstandings surrounding Hospice care. Join us as we dive into a very difficult topic openly and honestly. The link to the webinar can be found here: https://www.youtube.com/watch?v=e1CxsZP5f8o…
1 HD Uncut: Days of Our Lives 38:00
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38:00HD Uncut: Days of Our Lives
1 HD Resources Review: Help 4 the Holidays with Anna & Jamie 31:00
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31:00The Help 4 HD Resource Database has a resource called mRelief, which is a nonprofit that helps you determine eligibility and sign up for SNAP and other supplemental programs by using a quick survey via text message. You can text the word “Food” to 74544 to complete the screening survey over text or visit their website at www.mrelief.com. www.hungerfreeamerica.org Full Cart, which is a national food assistance program available to individuals and families who are facing financial hardships and food insecurity. www.fullcart.org. Dysphagia Outreach Project and they have a Dysphagia Food Bank program: www.dysphagiaoutreach.org/apply-for-assistance. www.lasagnalove.org/request www.helpingamericansfindhelp.org/christmas-assistance-help-by-state. Reddit page “Santa’s Little Helpers”. Parents and caregivers can submit requests for toys or other gifts for their children or loved ones and the general population can donate those items directly to you. They also have great suggestions of where else to find gifts for your loved ones and free or very low-cost activities to do with your families instead of gifts. You can find the Reddit page at www.reddit.com/r/SantasLittleHelpers.…
1 Update about Sage Therapeutics with Lauren Holder 31:00
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31:00Update about Sage Therapeutics with Lauren Holder
1 HD Uncut: Right to Choose with Lauren Holder 17:00
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17:00If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw
1 Rare Patient Voice with Wes Michael 34:00
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34:00Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $13 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers over 1,500 rare and non-rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand. Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago. Wes lives outside Baltimore, Maryland, with his wife, Cathy, children Julia and Cliff, grandson Taylor, and dog Stanley.…
1 Breaking Down Barriers: A Conversation Around Access with HDYO 1:16:00
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1:16:00Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceutical, uniQure, Wave Life Sciences, The Griffin Foundation, Neurocrine Biosciences and PTC Therapeutics.…
1 Our Lived Experience (Panel from Help 4 HD Symposium) 32:00
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32:00Our Lived Experience (Panel from Help 4 HD Symposium)
1 Are You Prepared for a Disaster? 35:00
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35:00Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters: Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You can also consider giving a trusted person a key to your home. Prepare for evacuation Make sure your home's exits are wheelchair accessible, and practice emergency evacuation drills with your family and personal care attendant. Also, plan for accessible transportation in case you need to evacuate or get around during or after a disaster. Prepare an emergency kit Include items to meet your individual needs, such as extra batteries for your wheelchair, medications, and a medical alert system. If you are deaf or hard of hearing, you can include a weather radio with text display, extra hearing aid batteries, and a TTY. If you are blind or have low vision, you can include Braille labels or large print on your emergency supplies. Register with your local emergency management office Many cities and counties have voluntary registries for people with disabilities. Know your capabilities Consider what you will be able to do for yourself and what assistance you may need. Prepare for different hazards Think about how to prepare for different hazards that could impact your community, and what your alternative shelter will be.…
1 HD Uncut: Thoughts from Strasbourg 29:00
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29:00HD Uncut: Thoughts from Strasbourg
1 End of Life: The Caregiver Perspective, Part 2 42:00
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42:00End of Life: The Caregiver Perspective, Part 2
1 UF Fixel Institute for HD Patients with Dr. Nick McFarland 24:00
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24:00For more information about the UF Fixel Institute located in Gainesville, FL, please click here.
HDYO Ambassador: Molly
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